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Jaxon’s Cure

P O Box 152

Port Orchard, WA   98366

360.876.2837

 

 

                        

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This is our son Jaxon.  He had a disease called Subacute Sclerosing Panencephalitis (SSPE).  The picture on the right was taken prior to the onset of this terrible disease and as you can see he was a picture of health.  He loved to run and play in the yard and make believe he was a Super Hero, Power Ranger, Jedi Knight . . . a typical 5 year old.  He lived life to the fullest and always looked forward to what tomorrow would bring.  Unfortunately his life and ours changed drastically. 

One thing you should know about Jaxon is that he was a foundling, abandoned at birth, left alone and survived.  His first 17 months were spent in an orphanage in the Philippines.  When he was 7 months old (too young to be immunized) he contracted the measles with no further complications.  At 13 months he was referred to us by our adoption agency and it was love at first sight, we couldn’t get him home soon enough.  Five long months later we finally had him in our arms.  We then made a promise to him and to God that he would never be abandoned again.

In February 2006 Jaxon began exhibiting symptoms typically associated with epilepsy.  The next 4 months were spent painfully watching Jaxon’s condition worsen as we searched for a diagnosis.  He was in and out of hospitals taking numerous tests, trying different medications visiting various physicians and neurologists.  Then in June we got the diagnosis, we were devastated to learn that our precious little boy had contracted a rare and nearly always fatal disease called SSPE.  The cause . . . an altered form of the measles virus.

This horrible disease made Jaxon totally dependant on us for his care.  Jax lost his ability to speak, walk and crawl.  He had difficulty chewing and swallowing so he was fed carefully with specially prepared foods and we had to supplement with liquid nutrition through a tube in his stomach.  His communication was limited to audible sounds, body language and a very brave smile.

Jaxon fought bravely for his life armed with the love and faith of his family and friends.  He was a fighter and he never gave up, we are so very proud of him.  We made a promise to Jax, we’re not going to abandon him or our quest to find a cure for SSPE so we will continue to raise awareness and funds. 

Every time we think of our son we count our blessings and look forward to a tomorrow that will bring the cure . . . Jaxon’s Cure.

Thank you for keeping Jax in your thoughts and prayers and for you continued support in finding Jaxon’s cure.

Paula & Oscar                

Jaxon’s loving parents

 

Jaxon’s 

Mission Statement

Jaxon’s Cure is a non-profit organization specifically established to raise awareness and find a cure for Subacute Sclerosing Panencephalitis (SSPE), a rare degenerative disease of the central nervous system caused by an altered form of the measles virus.  Funds raised will be directed towards research, cure development, and awareness on all issues related to SSPE.

May 2008